Run the Creek for Batten Disease

By Laura Edwards

Spring race season is here; I’m diving in headfirst, with four races (two of them out-of-state) in the next eight weeks. Next Saturday, March 21, I’ll be at Charlotte’s Run the Creek 5K to run in honor of my sister Taylor as well as Brandon and Jeremy Hawkins, local kids and brothers both battling Batten disease.

We connected with the Hawkins family shortly after Taylor’s diagnosis in the summer of 2006; in fact, Brandon and Taylor went to the same astute pediatric neurologist. continue reading →

Running for Taylor: Finishing 2014 Strong

By Laura Edwards

Great Smokies raceWhen I crossed the finish line of Charlotte’s Thunder Road Half Marathon blindfolded last fall, I knew the race would be a tough act to follow. But I didn’t intend to stop running for my sister, Taylor, and our fight against Batten disease and other rare diseases.

On National Running Day, I shared my plan to run a race in all 50 states – a feat not as rare as running 13.1 miles blind but one that I hope will help me spread our story far and wide.

With Oregon and Tennessee crossed off the list, I’m looking ahead to the remainder of 2014 and beyond. Here’s what I have in the works:

Great Pumpkin 5K Race – Saturday, Oct. 25 in Rock Hill, South Carolina

I don’t run many 5Ks, but I signed up for the Great Pumpkin 5K Race, a small event hosted by the Rock Hill Striders just inside the South Carolina border, because I want, almost more than anything where running is concerned, to see my sister at the finish line of a race. Taylor hasn’t been able to come to one of my runs since I logged 13.1 miles on a quarter-mile loop around the town green in Davidson, North Carolina for a Batten Disease Support & Research Association fundraiser in June 2012. But Rock Hill is 20 minutes from my parents’ house, and the race starts later than most, so we’ve got a shot. I’ll wear a purple Halloween costume that captures the spirit of Taylor for the Great Pumpkin 5K. Have ideas? Let me know in the comments! Want to run with me? Sign up here!

Playing for OthersCharlotte’s Thunder Road Half Marathon – Saturday, Nov. 15 in Charlotte, North Carolina

I’m not running Thunder Road blindfolded this year, but I’ve been signed up for the half marathon since registration opened in January. Playing for Others, the wonderful teen organization that made our cheer station come alive at the 2013 race, is supporting us again this fall. They have something new up their sleeves; I’ll be sharing their plan in a future post, but for now, you’re invited to join us by registering to run the 5K, half marathon or full marathon for the Taylor’s Tale team. Sign up here!

Huntersville 5K Guinness World Record Attempt

On Saturday, Dec. 13, the Charlotte Running Club will attempt to break the world record for most runners tied together while completing a 5K race. The current record stands at 116 runners, and the club hopes to have at least 200 runners. After running Thunder Road blindfolded and tethered to my good friend Andrew Swistak last year, I couldn’t resist signing up to be part of this cool event. You can still join us! You don’t have to be a Charlotte Running Club member, and there’s no cost to participate on the team, though you have to register for the race. For the $20 registration fee, you’ll get two t-shirts (race t-shirt and Guinness World Record attempt t-shirt) if you register by Nov. 8. Send an email to if you’re interested in being on the team. Do this before you register!

To 2015…

I’ve already registered for five races in 2015 including events in four states outside my home state of North Carolina. Taylor’s courage inspires me to run farther and work harder in all that I do. I can’t wait to share more of this journey with you! Want to stay up to date on my quest to run in all 50 states for the fight against Batten and other rare diseases? If you haven’t already, subscribe to the blog to get updates. Thanks for your support!

My Turn to Coach

By Laura Edwards

Run the Creek 5KMy mom, Sharon King, walks to stay in shape. She’s not a runner and says she’ll never be a runner.

Last year, we walked the Run the Creek 5K together in support of the Batten Disease Support & Research Association. When the finish line came into view, without warning, Mom gave me a gentle push and goaded me into a two-woman race. Then, she broke into a sprint and cackled as she crossed the finish line a split second ahead of her runner daughter.

Mom hasn’t let me forget that she beat me that day. But she’s never run a 5K from start to finish – something my sister Taylor, who’s blind and suffers from Batten disease, did twice.

On Nov. 16, I’ll run Charlotte’s Thunder Road Half Marathon blindfolded to honor the five-year anniversary of Taylor’s first 5K. And about 30 minutes after my sighted guide, Andrew Swistak, and I each grasp an end of a three-foot bungee cord and I pull the blindfold over my eyes to begin my first-ever blindfolded half marathon, Mom will join a mass of people for the start of the event’s 5K.

Mom says she’s not ready to run that 5K today. But Andrew’s done a great job coaching me to run in a dark world, and now it’s my turn to coach. Over the next four months, I’ll alternate between meeting Andrew for blindfolded runs on the Charlotte streets and meeting Mom at the Y for 5K training. We’ll start by alternating between running two minutes, then walking two minutes. We’ll work up to a mile, then two, then three.

By race day, Mom will be a force on that 3.1-mile race course. She may not believe in her ability to run a 5K from start to finish, but I do. Because she told me today that she’ll run it for Taylor. And I’ve never known my mom to fail at anything she said she would do.

The Thunder Road Marathon, Thunder Road Half Marathon and 5K have plenty of room for other Taylor’s Tale supporters. If you’re interested in running to honor Taylor and support Taylor’s Tale, the 501(c)3 non-profit organization we founded to fight Batten disease and other rare diseases, please contact us.

World Rare Disease Day 2013

By Laura Edwards

This morning, about 80 people joined Taylor’s Tale as we recognized World Rare Disease Day and made an exciting announcement about the fight against Batten disease.

I shared our family’s journey and introduced our featured guest. Following is a modified version of my comments.

My “little” sister is 14. We’re the same height.

But I still remember the day she came home from the hospital. I raced my then-best friend and now-husband up the stairs to peer over her crib (he got there first).

I remember how my sister learned to read as a toddler.

I remember 5-year-old Taylor. She seemed perfect. Beautiful. Intelligent. Healthy. Spunky. She kept our brother on his toes. The world – and Stephen – were hers to conquer.

But 6-year-old Taylor couldn’t handle first grade math. Addition and subtraction left her in tears.

Seven-year-old Taylor couldn’t find her way in dim places.

Just three weeks before my sister’s eighth birthday, a monster called Batten disease burst into our world and shattered it into a thousand little pieces.

Batten disease is a rare, inherited disorder that affects mainly children. To get it, kids have to inherit a “bad copy” of the gene from each of their parents. I got one good copy and one bad copy, so I’m a carrier; that means that I’m healthy but could pass the gene on to my children. My brother is a carrier, too.

Taylor got two bad copies.

With one roll of the genetic dice, our little sister got a fatal disease.

Fourteen-year-old Taylor lives in a world that’s always dark. She can’t learn like other kids. She has seizures. She loves to sing, but soon, Batten disease will steal her speech. Even now, she only has a few words. I can ask my sister if she had a good day at school, but we can’t talk about it.

Taylor ran two 5K races with the help of a sighted running buddy through the Girls on the Run program at her school. But that was four long years ago. Soon, my sister will be in a wheelchair.

Batten disease steals the lives of children.

It upsets the natural order of things.

Children aren’t supposed to have their dreams snatched away from them by a monster like Batten disease.

They aren’t supposed to die.

Taylor was diagnosed with infantile Batten disease on July 24, 2006.

I still remember the long moment we all shared in the floor of my parents’ dark bedroom; wrapped in each others’ arms; soaked in each others’ tears.

The doctor who delivered that news told my parents to take her home and make happy memories.

We don’t have anything against happy memories. But while Batten disease is in our DNA, going down without a fight is NOT.

Every day with Batten disease is a hard day. Still, in the near-seven years since the day our lives changed forever, we followed the doctor’s orders. We made our fair share of happy memories.

But we made time for fighting, too.

With the help of good friends, we founded a non-profit organization. We raised nearly half a million dollars for potentially life-saving research and promoted awareness of Batten disease. We advocated for increased support for the rare disease community.

We partnered with other groups that share our mission; American organizations such as the Batten Disease Support & Research Association and EveryLife Foundation for Rare Diseases, and international organizations such as the Global Genes Project.

And along the way, we met MANY families like ours.

One in 10 Americans suffers from a rare disease.

Chances are, you know someone fighting his or her own battle.

To borrow words from my mom, diseases like Batten are rare…but hope should not be.

That’s why I’m pleased to share reason for new hope with you today.

On behalf of Taylor’s Tale, I’m excited to announce that we’ve joined an international coalition of organizations founded by families like ours – families that refused to go down without a fight.

Together, we’ll fund gene therapy for two forms of Batten disease. This revolutionary work will take place right here in our home state at the University of North Carolina at Chapel Hill. The goal of this study is to pave the way for a human clinical trial.

I’ve watched this disease try to rob Taylor of EVERYTHING. I’ve prepared myself for the reality that I will likely outlive my little sister.

Bottom line – I HATE Batten disease. But in seven difficult, painful years, I’ve witnessed great progress. I’ve NEVER stopped believing.

And I believe in the ability of THIS project at UNC to help save the lives of children like Taylor.

Its leader is an expert in AAV vector design and gene therapy. He graduated from Auburn University and earned a PhD from Vanderbilt University. He completed a postdoctoral fellowship at UNC, specializing in central nervous system gene therapy.  His work focuses on the development of treatments for neurological diseases. He’s been published in multiple journals and mentioned in high-profile publications and blogs. His work is chronicled on the pages of a 2012 book that explores gene therapy as the next frontier through the stories of real patients and families.  The doors of his lab are decorated with photos of the children for whom he and his colleagues go to work every day.

The leader of the Global Gene Transfer for Batten Disease project is Steven Gray, PhD.

To learn more about this exciting initiative, click here.

group at Rare Disease Day event

Dance with Me

By Laura Edwards

20120722-195412.jpg Five years ago, just days shy of the one-year anniversary of my little sister’s diagnosis, Mom and I flew to Rochester, NY for our first Batten Disease Support & Research Association annual conference. The airport shuttle dropped us off in a parking garage beneath the hotel, and we rode an escalator up to the lobby.

I will never forget the moment we stepped off that escalator into a sea of children strapped into wheelchairs with ugly IV bags and feeding tubes and beautiful yet broken eyes. Right then, standing in that lobby, more than 700 miles from my golden-haired, caramel-eyed sister with the sharp wit, sassy smile and broken gene, Mom turned, hid her face against my shoulder, willed herself not to cry and willed Taylor’s fate not to deliver on its horrible promise. That day, Mom vowed to never take Taylor to a BDSRA conference.

This year, the conference came to our hometown of Charlotte, NC. Affected children and their families and scientific and medical experts from all over the world spent four days in a hotel just a 10-minute drive from my parents’ neighborhood. But still, Mom held true to the vow she made in that hotel lobby in Rochester at the dawn of our journey.

The BDSRA conference always includes a Saturday night banquet that begins with a procession of affected children into the hotel’s ballroom followed by a dance (siblings dance to raise money for BDSRA, and others get in on the fun). I didn’t dance last night, even though I’m a sibling and my husband and dad joined Mom and me at the banquet. Instead, when I wasn’t working with a good friend there to film a video for Taylor’s Tale, I stood on the edge of the parquet dance floor and watched. I thought about how much Taylor, at home with a respite care worker, would have loved the dancing part of the banquet. I smiled at the memory of our friend Callie’s wedding in May, when Mom, Dad and Taylor ruled a small corner of the beach house’s dance floor, and smiled even more broadly at the image of my sister and my cousin Morgan in their matching flower girl dresses, twirling around the foyer of the Inn at Ragged Gardens at my own wedding exactly one month to the day before Taylor’s diagnosis.

As I watched, I noticed Emily, a beautiful, blonde angel of a little girl, ruling the dance floor much as Taylor did at her age. As my gaze followed Emily’s twirls and jumps and spins, it landed on her father, Tracy. In that moment, Tracy rocked to a much slower song than the one that played from the DJ’s speakers. He held Emily’s affected twin sister, Laine, in his arms.

I hate, hate, hate this disease.

That’s all.

Loopy for a Cause

By Laura Edwards

If you read my blog at a regular clip, you know I’m a runner. I run because it feels good. I run because it’s good for me. I run for Taylor.

This Friday – Saturday (June 1-2) marks the second annual “Loopy for a Cause” on the Green in downtown Davidson, NC. The event, founded by Davidson resident and ultra marathon runner Jeff McGonnell, coincides with Batten Disease Awareness Weekend and raises money for the Batten Disease Support & Research Association (BDSRA). Last year, I saw Jeff circle the town Green for part of his 24-hour “loopy” run. Six weeks removed from an Achilles injury, I had to watch from a golf chair.

This year, I’m free from the orthopedic boot that blessed me with one of the world’s greatest tan lines last summer. So instead of watching from a golf chair, I’m scheduled to run with Jeff from 3-4 p.m. this Saturday, June 2. Last year, Jeff circled the Green 650 times, totaling almost 90 miles. I won’t come close to that, but I’m excited to join Jeff in his amazing efforts.

If you live in the Charlotte area, I hope you’ll come out for at least a portion of this great event! In case watching us circle the town Green isn’t entertaining enough to suit your taste, you’ll also have the opportunity to enjoy a movie on Friday evening – organizers will show “Ferris Bueller’s Day Off”  – and 10 hours of live music on Saturday.

You’ll also have the opportunity to donate to a great cause – the fight against Batten disease. This weekend’s event benefits the BDSRA. If you choose to donate, I’ll wear one of many costumes. You can pay to make me run in a big wig, flowered hat, cape, dress or even a cow outfit!

Once again, I’ll be running from 3 p.m. to 4 p.m. this Saturday, June 2. Come on out and join the fun (bring a chair and a camera)!

Jeff will kick things off at 6 p.m. on Friday and wrap up at 6 p.m. on Saturday (the live music will end at 8 p.m. that night). To learn more, click here.

Tater Tots and Camaros

By Laura Edwards

ourboys 10K 2012Congratulations to Chris Hawkins, the father of two boys fighting juvenile Batten disease, and Jeff McGonnell and Andy Brown, who helped Chris pull off his annual “ourboys” race north of Charlotte this morning in support of the Batten Disease Support & Research Association (BDSRA). I traveled to Harris Road Middle School in Concord to run the 10K, a new option this year in addition to the traditional ourboys 5K.

I broke just about every pre-race rule this time, gorging on tater tots (yum!) at a burger place last night, staying up past midnight and stealing precious minutes of sleep this morning, which meant I ate breakfast just an hour before the start of the race. I didn’t warm up, because catching up with friends at the start line (thanks for coming out, Jill and Matt!) was more fun.

In any case, I went home with a first place medal, winning the 30-34 age group with a time of 48:59 (7:54/mile pace) – good for a new PR for the 10K. I may need to make tater tots part of my pre-race ritual! 🙂

I rarely stick around for awards presentations, but I was one of the last to leave today after getting my medal. Before I walked to my car in the near-empty lot, I spent some time with Brandon and Jeremy Hawkins, the guests of honor.

At 6’2″, Brandon towers over me. He’s headed to high school this fall. When Chris and Wendy Hawkins first heard the words “Batten disease” in 2006, Brandon and Taylor shared the same neurologist. Doctors diagnosed just weeks apart.

Jeremy is a social butterfly; he kept people company while they signed a large photo of the boys or waited for their custom Braille bookmarks, which Brandon created on his Brailler. Jeremy will start middle school in August.

I’ve watched these kids grow up over the past six years; I’ve watched Batten disease steal bits and pieces of them, but I’ve also watched them find joy in the simple things, like their ride in a cherry-red Camaro along the 5K course this morning. Taylor has that gift, too.

To learn more about Brandon and Jeremy or the ourboys race founded in their honor, visit


Chapter ?

By Laura Edwards

Chapter OneFive years ago tonight, 160 people gathered at a private home in Charlotte. All 160 knew my family in some way and that Taylor had recently been diagnosed with something called Batten disease.

Near the end of the evening, my mom, dad, brother, husband and I stood together in front of all of those people. My mom thanked everyone for coming and appealed to their hearts. Lance Johnston, executive director of the Batten Disease Support & Research Association, stepped in, educated the crowd on the disease and appealed to their minds. Finally, with my brother at my side, I made at once the easiest and most difficult speech of my life. I cannot remember the words I spoke – I rarely prepare remarks in advance and did not do so that night – but I remember how they felt. After I closed, my dad, who until that moment had remained silent in the background, stepped forward and read a Father’s Day card from Taylor.

Moments later, that roomful of people donated $40,000 – capping the first of many successful evenings for Taylor’s Tale.

We called it Chapter One.

I’m battle-weary. And I know we’re on borrowed time. But I still believe. And if you are one of the 160 people who shared Chapter One with us – and you’re reading these words now, five years later – that means a part of you still believes, too. My family’s fight has gotten much tougher since that night, but on the other hand, wonderful, amazing things have happened in research, shining a bright light into the dark world of Batten disease. Much of the progress that has been made specifically in the area of infantile Batten disease – the form that affects Taylor – may never have happened if not for the generosity you showed on the night of Chapter One.

We stopped counting chapters after that first night. We don’t know how many chapters we’ll need. But we’re focused on writing the happy ending to this tale, once and for all. And we’ll do whatever it takes to get there.

View Photos from Chapter One